This blog post by Ann Varghese, M.Sc., Senior Program Officer at IMA World Health, originally appeared on the American Indian Foundation blog and was reposted with their permission. Visit End the Neglect later this week to see case studies on lymphatic filariasis morbidity management, also from IMA World Health.
An estimated one billion people worldwide are affected by one or more neglected tropical diseases (NTDs). These diseases disproportionally affect poor and rural populations who lack access to clean water, sanitation, and essential medicines. They can cause chronic suffering, disability, compromised mental and physical development, and social stigma.
Volunteers do a home visit to an LF patient with advanced lymphoedema.
Lymphatic Filariasis (LF) is a highly disabling disease that is endemic in 83 countries with over 1 billion people at risk. It poses a major health issue in India; almost 45% of people at risk for LF globally live in India [1]. The disease is a parasitic infection spread by mosquitoes. It is caused by thread-like parasitic worms that damage the human lymphatic system. The disease can cause severe disfigurement with swelling of the limbs and breasts (lymphoedema) and genitals (hydrocele). LF prevents individuals from experiencing a normal working and social life, furthering the cycle of poverty. The WHO global strategy for elimination of LF as a public health problem is based on two key components:
- interrupting transmission through annual large-scale treatment programmes, known as mass drug administration (MDA), implemented to cover the entire at-risk population;
- alleviating the suffering caused by lymphatic filariasis through morbidity management and disability prevention.
An LF patient is back to work as a result of the home based care program.
It is estimated that over US$842 million is lost to patients and households in India every year from treatment cost and reduced working time due to LF. [2] Millions who are infected and affected need medical/surgical interventions, support and training in self management care.
IMA World Health (IMA) and the Centers for Disease Control and Prevention (CDC) have provided financial and technical assistance for a LF morbidity management program in India since 2007. The Church’s Auxiliary for Social Action (CASA), a national faith-based organization in India, implemented the program intervention in the highly LF endemic state of Orissa, specifically in the Khurda district. Since inception, the CASA program has identified, registered, and trained over 25,000 LF patients in community-centered, home-based care. Program implementation had five stages: awareness, education, unity (cooperation), organization, and action.
An LF patient demonstrates how she does her washing twice a day to minimize the effects of her LF symptoms.
The communities had many misconceptions regarding the cause, manifestations, and prevention of LF. Awareness was raised through street plays, wall paintings, posters, booklets, radio announcements and door-to-door visits. Education and training in self-care and lymphedema management were taught to LF patients and their family members. To reduce swelling of limbs, patients were taught how to properly wash limbs, exercise and elevate, and how to treat acute attacks (several days of painful swelling or fever) or when to seek professional health care from the village health worker. Family members were an integral part of the training to provide physical and emotional support to the patients and to reduce stigmatization. Patients reported significant improvement in their emotional and physical condition.
CASA volunteers do a community demonstration to teach LF patients proper washing techniques and educate the community about LF.
Global focus is often placed on disease prevention through MDA but those who suffer from LF are often forgotten. Through low-cost interventions, LF patients can regain hope to live productive and happy lives. One of the benefits of this home-based care model is sustainability. After the initial expenditure for identification of patients, training and supplies, costs to maintain the program should be minimal. Once a patient is taught self-care, supplies are generally inexpensive. If lymphedema management is integrated into an existing functioning health system, particularly for referral care, trained health workers should be able to address patient needs.
Past support to the program was provided by USAID, CDC, the Global Network for NTDs (GNNTD), and private online donors. If you are interested in learning more about NTDs or would like to support the program in India, . Due to a lack of funds, the program in Orissa closed in August 2012.
[1] Cantey PT, Rout J, Rao G, Williamson J, Fox LM (2010) Increasing Compliance with Mass Drug Administration Programs for Lymphatic Filariasis in India through Education and Lymphedema Management Programs. PLoS Negl Trop Dis 4(6): e728. doi:10.1371/journal.pntd.0000728
[2] Ramaiah KD, Das PK, Michael E, and H Guyatt. (2000). The economic burden of lymphatic filariasis in India. Parasitol Today 16(6):251-3.